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TOPIC: My mom has dementia but with an asterisk

My mom has dementia but with an asterisk 11 months 2 weeks ago #40311

  • michele373
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bev,

you are so right.. boundaries and doing the best that we can. that's all we can do!
envelopes of cash huh..my mom does the same lol.. I guess better than the mattress!

I know right now my sis is taking the brunt of the daily but shes the one who doesn't want to move out. so be it. I offered.
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My mom has dementia but with an asterisk 11 months 2 weeks ago #40308

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METOO!

Just for a bit of comic relief..

I had a prescription refill delivered to my mother who lives in assisted living facility.

She phoned me in an absolute panic, "They want me to pay for it and he won't take a credit card....what do I do?"

ME: "Well you have three alternatives, you can give him cash, write a cheque, or he can take it back to the store and I can pick it up and get it to you at a later date, but not today."

HER: " But I do not have any money here."

ME: "You just told me last time I was there that you had envelopes full of cash."

HER: "Well I do, but I am not going to use that."

ME: thinking HUH? "Well then you only have two choices, write a cheque or he takes it back."

I am learning how to set boundaries! But honestly...I could not make this stuff up.

I expect it all turned out OK as I have not heard from her since.

Remember....we are all doing the best we can!
BEV

"Fewer faces and more spaces"

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Last edit: by bomalley.

My mom has dementia but with an asterisk 11 months 2 weeks ago #40281

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Nan,
Liz and I are also sending hugs and prayers your way. >:D :x
And also Laurie and Michele since they are also dealing with senior parents.
Definitely trying at best. My wife and I have been there. :ohmy:
Don
My Grandkids say I’m a cuckoo head. ;)
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My mom has dementia but with an asterisk 11 months 2 weeks ago #40272

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nan.

im so sorry to hear that. these are our mid life growing pains..you feel helpless and frustrated. I hope your dad takes some of your advice to heart. it must be really tough on him too.
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My mom has dementia but with an asterisk 11 months 2 weeks ago #40257

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I was thinking about you and hoping for better news...sending hugs
Laurie
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My mom has dementia but with an asterisk 11 months 2 weeks ago #40244

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Update- from father's day
Nuedexta prescribed off label is not covered it would have cost them $600 a month
They upped her Zoloft instead. Does not seem to be making any improvements.
I watched her have a panic attack and then fall into self pity after she couldn't fix her "adult underwear".
She keeps gaining weight.
Dad still has not met with any care taker.

Found these interesting articles
www.marijuanabreak.com/cannabis-for-dementia?fbcli...1TggV4etVz6hdS0c784M
www.beingpatient.com/cannabis-dementia/?fbclid=IwA...ZKqD5CLxrfiJfuKZsyPc

She still has trouble sleeping and has anxiety that medication is not helping. I feel he has to try alternatives at this point.

My straight to the point shot at my dad to get through to him. <em>She is going Helen Keller and you need to hire an Anne Sullivan</em>

Kratom that got me through the weekend- Green Borneo = Kratom Eye, followed by Red Malay from Laughing Lion
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Last edit: by Nan70.

My mom has dementia but with an asterisk 1 year 5 days ago #39252

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littlebear,

you are awesome im so glad you found this strain. im not an overly emotional person but helping my mom with serious self care is just too tough for me. ill do it in a pinch of course but it rattles me. which is why I did a lot of cold calling and found a good local agency. once a week to start. at least near me its a 3 hr a day block you have to pay for. which is fine. and they are nurses. which is what we need cause shes got a permanent pick line and other issues ect.

the agency rep even mentioned if she didn't 'mesh' well with the nurse they can send a different one. only time she gets a new person is if we change days/ hours suddenly. or if shes on vacation, personal day ect.

my mom doesn't mind me being her advocate but I can only do so much cause theres a lot she handles herself so my hands are tied. but I still try. but yes im still the 'child' I get it.

nan,
I totally understand. this is a new growing pain for all of us when and if this happens. we do go to docs at the geriatric center and they do truly try and help and coordinate next steps, give us helpful info, and check on her meds. her situation is a little different cause she sees her primary once a week for the ostomy dressing change so her doc helps a lot.

and thank you for starting this you are right we all need to vent a little
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My mom has dementia but with an asterisk 1 year 5 days ago #39234

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Don't feel bad. We like to think that our medical system looks out for the patient, but it is too fragmented. There is some wisdom in the idea of a primary care doc that oversees it all, but in reality, it doesn't always work that way. Things slip through the cracks and the big picture gets lost.
The advantage of a caregiver is that they are not family. The patient is not as emotionally engaged and can often get them to listen where they can't hear a family member. The caregiver is the advocate, and when a patient feels that, they will sometimes open up in a way that they won't talk to a family member or even a doctor.

You can start slow. Have someone comefor a couple hours a week. They can get to know your mom, do a few chores like laundry and befriend her. A lot of people want nothing to do with a caregiver, they are sick of doctors and don't think they need help. I get a lot of these patients because I am good at getting them to accept help. A caregiver could take her shopping, have lunch, get to know her so that she feels someone is on her side.

If my patients go into the hospital, I am usually scheduled to go and be with them. I make sure they are getting their meds on time, and that their needs are met. And most of all, someone they can talk to.

There is a limit to what a doctor can observe in a brief visit. They rely on input from family to assess the patient, and a family member is not the best observer.

I have one patient who has dementia and shortly after I took the case I discovered that the family really did not understand dementia. The father had it and mom was his caregiver. The daughter and her mom were fighting a lot, and it wasn't until I emphazied to the daughter that mom has dementia did it start to sink in. Her mom wasn't being difficult, the arguing was all a symptom of the illness. Mom was exhausted caring for dad, scared of her own lapses and daughter completely missed it.

Many families mean well, but they can't always fulfill the role of advocate for their parents. They are still the parent, and sometimes they have a hard time really letting go with a family member. No one likes to think that their kids have to take care of them.

You can shop around. If your mom doesn't like the first caregiver, try another one. I have patients that only want me to come, but I convince them that they need to get to know a couple of caregivers because I may not always be available. A good agency will work with you to learn your mom's interests so she can be matched with someone.

Oh yeah, the poop issue. When I take my patients out I take a change of clothes, a clean depends and a lot of baby wipes. I let them know that I am there to deal with any accidents. Works like a charm. I joke about it with them, but it is such a powerful thing for them to know it can all be handled. No muss no fuss. A quick detour to the nearest restroom, a fast change and cleanuup and all is well..
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Last edit: by Littlebear3. Reason: clarify

My mom has dementia but with an asterisk 1 year 6 days ago #39227

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Littlebear thank you for your post as a care giver you have really pinpointed these issues.
I feel its really important my father gets a caregiver for her. Someone who is trained to help and cannot be manipulated by my mom.

I feel stupid for believing that when she saw a specialist that advocates for her well being would be automatically part of her care.

Thank you everyone the input and concern.
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My mom has dementia but with an asterisk 1 year 6 days ago #39225

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I relate to all of this talk. I have been doing caregiving since I retired last year, and I have seen all of these stories. I worked with one woman that was getting close to the hoarding thing with groceries. Part of it was that it was her only activity. When she became incontinent she was reluctant to go any place, but when I started caring for her, I would take her shopping.
It was an all day event, but I could see why she did it. It was what she did, her vision was going, she was physically weak with bad back pain, so rolling a grocery cart around the store was her activity.
I've dealt with demential patients too. Sometimes the daughters cannot deal with their mom, but I can. I think there is a mother daughter dynamic that makes the relationship hard when the daughter is an adult, and mom is aging.

But the bathroom thing is so common. Pooping or not pooping becomes the focus of the day. I am glad I am regular, could set a clock by my bowel movements. Hope that never changes. I am glad my mom never went through that stuff, and I am glad that as a caregiver I can work with these moms in a way their daughters can't. I do think depression is a lot more common in the elderly than anyone realizes. It is a tough time of life. Another thing I see is that some of these people are on so many meds. One doctor starts the med, but it never stops. The stay on it for life. For so many meds, the side effects include digestive issues and also depression. Makes me wonder how much pharmaceuticals contribute to the problems of aging. It is something I am going to be careful of for myself. But very few seniors question the doctor. And in some cases they rely on a family member to take care of it.
We really need health care advocates for the elderly.
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